EGFR now 18

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Havent been on here for a while.

Had my bloods done 5 weeks ago and EGFR was 21, seems to have gone down by 1% every 6 weeks or so. Was asked to have them done 2 weeks ago and EGFR was 18. Had to have them repeated just incase it was a one off but was still at 18.

Its decreased much quicker than previously.

Have the specialist nurse coming out to me on 23rd to discuss transplant.

My problem is, the 23rd seems so far away.

Can anyone advise what will happen at this meeting please. My head is playing games with me and freaking me out now.

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10 Replies

  • Posted

    Hi Stephy,

    Sorry to hear about your loss of kidney function.  If you are meeting with a specialist nurse to discuss transplant, that can only mean one of 2 things in my mind:

    1)  You have someone in your life (relative, friend, spouse...?) who has offered to donate a kidney, hence a live donor.  If this is the case, the nurse would talk about getting them evaluated if they haven't been already (to ensure they are healthy enough to donate), what the surgery entails, the recovery duration, what to expect, etc.

    2)  You do not have someone in your life who has offered to donate a kidney, in which case you will likely need to begin considering dialysis.  The nurse will talk about the 2 different forms of dialysis, what each will entail, pros and cons of each method, etc.

    I'm not sure if that helps or not; it might help to know if you have a living donor?

    Best wishes,

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    • Posted

      Hi Mike.

      Thank you for ur reply.

      My mum has offered to be a live donor, she has the same blood group but no other testing has been done yet to see about her health and match etc.

      Is that what will happen now?

      Will they give me info on everything?

      Im just so scared as i have 3 children and am on my own, worried for them if anything goes wrong.

      Steph

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  • Posted

    I hate to be the bearer of bad news but it may be time to think about diyallis, that would mean getting a fistula, should you go with Hemodialysis. I recommend getting ready early , I didn't and the delay was created a lot of pain and suffering I could have bypassed should I have acted sooner. It is better to have a fistula and not need it, than need it and not have one. The thing to remember is you are not alone, a lot of people have been where you are, and are doing well just one day at a time .

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    • Posted

      Hi James,

      Thanks for reply.

      Can I ask, if there is a live donor available do you have to have dialysis? I dont know anything really tbh and dont know if that is what happens before transplant or can it be avoided?

      Thanks again, steph

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  • Posted

    Hi,

    My GFR dropped quickly towards the end. I have a live doner and the work up started in May 2014 we will transplant in Sep this year it can take time.  You also go on the live doner list anway up until you are given a date for transplant from your mum, it also depends on what antibodies she has the same blood group is just part of it.  You will bot have various tests etc and it takes time.  You will need to pick a type of dialysis there are two types, hospitals like you to have peritoneal where posible but the choice is yours at the end of the day and if you don't like one you can change no problem.  Google haemo and peritoneal and see which is best for you.  I have peritoneal and do this myself at home each nightm this suits my life style better as I am young and have a family and I still work.  You have to have an operation to fit a tenkoff catheter I was in and out the same same day just couldn't stand up straight lol.  It takes about 2 weeks to heal and then you go to your local renal unit to learn how to do the dialysis mine took about a week but you have the nurses on call 24/7 so not scary.  It doesn't really hurt but I am only thin so can't stand much fluid.  The macchine puts a set amount of fluid called the fill then it stays for a bit thats called the dwell then it emptys into a bag thats called the drain, this happens a few times then you geet up and off to go.  There are less restrictions fluid food etc I don't know much about haemo only what I have read so wouldn't be fair to give my opinion of that.  Ask to visit some of the people who actually have it.  I was 9% GFR before I started dialysis and by that stage felt pretty crap and I couldn't eat, couldn't even look at food it made me feel sick.  Everyone is different though and I was breathless.  AFter about 4 weeks on dialysis I started to feel better.  Even if you know its coming the day you are told it still knocks you for 6 don't be scared there are lots of people to help and advise dialysis is not that bad its just the unknown. Keep us posted and chin up you will be fine xx

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    • Posted

      Thank you so much Helen. Ive had this since i was 5 but its only gotten worse since having my children.

      I had so many questions but you have explained things so well i feel much more at ease with it all now. I cant believe it takes so long though.

      Thank you and i really hope all goes well for you next month and let us know how your doing x

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    • Posted

      Aw will do, I was 13 when diagnosed and managed all the way to 37 before it all went west.  Worse after my second child.  There is a lot of excellent advice on here with some lovely people.  When I had pipe as I call it fitted they tried to send me home from hospital without doing it, I was horrified as life and death by this point and when they said go home I asked when are you going to do it.  When they said they didn't know I told them I was going nowhere and refused to leave, they phoned my nurses in the renal unit to ask if I really would stay and they said I would so they had to do it lol I wasn't moving for no one til I had my pipe.  Sometimes you need to stand your ground.  Like others have expained they need to make sure your Mum will be ok with one kidney, they do a projection of what her kidney function will be when she is older and if it is below a certain amount they wont go ahead.  You will have bloods which I am sure you are used to, you have a chest xray, a heart scan and I had to go on a bloody exercise bike in August with a mask on my face it was boiling and I couldn't breath.  The bloke was talking to me I had to tell him to shush as I couldn't pedal, breath and speak to him.  My friend had all the above plus dye injected into her to see how quick it is procesed by the kidneys, then at the transplant hospital more indepth testing and scans and they will check there is only one valve coming out, where it is positioned etc. You need to be aware (the hospital should also tell you) that when these tests start sometimes things are found wrong with the doner that they didn't know about so other tests are needed to make sure and on occasion you can't go ahead.  Look how well you are doing if you are looking after your three children alone, you will cope with all that life throws at you, you just need to look at all you do already.  I got a free garden shed!! every cloud and all that.  It is to keep the dialysis stuff in as they deliver it monthly and it wouldn't fit anywhere in my house.  It looks a lot to start but you get used to it.  When you have done your research if you have any questions about PD peritoneal dialysis let me know I can answer stuff about that from a personal perspective.  You will be fine x

       

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    • Posted

      Aw helen all this is so helpful. Really glad i asked on here now. Wasnt going too.

      My mum has 2 valves from her kidneys, she had the work up for transplant about 10 years ago as she was going to be a donor for her brother but one become available for him.

      I had the heart scan and a 48 hr ecg last week, not had results yet though.

      Thanks again x

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  • Posted

    Hi Stephy,

    Others have provided good answers so I will try and summarize:

    Your GFR is currently 18.  Typically, and AFAIK, an individual will begin dialysis when their GFR reaches 12 and lower.  (In my case, I got down to 7 just for comparison).  If your kidney function loss continues at its current rate, it sounds like you may need to start dialysis within the next 2 to 5 months.  I think your actions will need to be:

    1)  Talk to your transplant team and get your mother registered and tested as soon as you can (if that's possible).  As others have mentioned, it takes a fair bit of time to get someone completely tested because they will test not only for blood, but also other genetic markers to ensure a good match.  They will also want to ensure your mother is in good health, because they would never take a kidney from someone whose health would be jeopardized.

    2)  Begin researching dialysis.  There are 2 types - haemo (blood) and peritoneal ("belly fluid exchange"wink.  Understand that both require surgery to install the input/output valve, and both require time to heal - in other words, even if you walked into hospital today and said "I'm ready for dialysis" there would be roughly a 1-month lead time before you could actually start it.  As James notes, this is why it's better to get the surgery before you start feeling really lousy as your GFR continues to fall.  Once your GFR reaches the 12 threshold (roughly speaking), the decision to start dialysis becomes yours.  How do you decide?  It's based on symptoms.  In other words, "how bad do you feel"?  There comes a point where you say "I feel lousy and it's only getting worse, let's start dialysis now" - and then off you go.

    Like James, I also let it go a little too long and by the time my GFR reached 7, I was wishing I had had the surgery earlier.  I just had to grin and bear it for 4 weeks while the surgery healed.  The only other alternative was emergency dialysis - which they could have done, but that would have meant long needles and poking holes, which is never fun.  Typically, emerg dialysis is only done if they feel someone's life is in jeopardy.

    So to sum up:  if your mother can be tested relatively quickly; proves to be in good health, and is a good match for you; the surgery can be scheduled accordingly; and if your kidney function lasts long enough, it's possible you won't need dialysis and can just bypass it.  If not, then the opposite is true.

    That's my 2 cents.  Hope it helps, and best wishes,

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    • Posted

      Thanks Mike, thay is all really helpful.

      Ive been looking up the dialysis and I think one would be the best option but family think the other.

      Going to all take a while and alot of thinking/talking.

      Thank you for you advice and input. Its good to have people explain things in a simpler way and their own experiences.

      Good luck with everything x

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